Mental health problems can start in childhood and last lifetime

By Valerie Berenyi, Postmedia NewsOctober 17, 2011

CALGARY — Jodi came into the world six weeks early. She wasn't a difficult baby, but she "always needed a little extra attention," says her mom Linda.

"We were very overprotective because she was a preemie. And I was not well as a mom because I had toxemia. It was a hugely difficult time for our family," says Linda, a Calgarian who requested we not use the family's last name.

As a toddler Jodi was bright and full of life; she followed her big sister around, soaking up the world like a sponge.

Just before she had her tonsils out at age six, Jodi learned about the "germs in her throat" during a preparatory session at the hospital. She began washing her hands to get rid of those germs. Constantly.

"Every time I looked down the hall she'd be in the bathroom, standing up on her little stool, washing her hands," Linda recalls. "Before bed, she'd scrub her hands and hold them above the covers so she didn't touch anything until morning."

Around the same time, Linda's husband Dale noticed their daughter surreptitiously tapping things with her ring finger as she moved about.

When Jodi started Grade 1 she was eager to learn but distracted and annoyed by other children. The teacher told Linda and Dale there was something "a little different" about their daughter, describing her as aggressive and super-sensitive, and recommending Jodi be tested for attention deficit disorder.

They didn't do the testing, figuring their smart little girl was just bored and would outgrow it. She didn't. Jodi was teased and bullied at school. She didn't fit in, had no friends and felt increasingly isolated and lonely. By Grade 6, Jodi began cutting herself, "really trying to hurt herself — a lot," says her mom.

She'd use whatever was sharp enough to slash her arms, and would bruise herself with things like the horns of her little plastic ponies, covering everything up with long sleeves.

When Linda and Dale sought help for her daughter in the small Alberta town where they lived, she says they were told: "Oh, it's a phase. Lots of kids do that. She probably saw somebody do this at a sleepover. It happens all the time."

"They did not address it at all. I thought 'Well, maybe we are overreacting.'" But whenever the family reprimanded Jodi's behaviour, it worsened.

"It was terrifying. Your kid is bleeding."

Increasingly, mental health disorders are seen as resulting from a complex interplay of genetic, biological, personality and environmental factors that may have roots in childhood.

How early is unknown, but behavioural problems with babies and toddlers can show up as difficulties with eating, sleeping and playing.

These "disturbed biorhythms" may reflect a child's difficult temperament or a stressful environment, says Dr. Chris Wilkes, an associate professor at the University of Calgary and the former division chief of child and adolescent psychiatry for Alberta Health Services.

They can also affect the attachment process between mother and child. A child who's hard to feed and settle can be tough to raise — even though a calm, soothing and supportive environment is precisely what's needed for both child and parent, he says.

Usually, things resolve themselves around age two or three. If not, an assessment may be warranted.

Between 60 and 80 per cent of adult psychiatric problems begin at some point in childhood, says Dr. Barry Nurcombe, an esteemed child psychiatrist from Australia who spoke in Calgary earlier this year about the importance of child and adolescent mental health.

There is research being done to detect early signs of mental illness but the area is poorly funded, says Nurcombe.

"It generally goes begging because it's often at the tail end of funds that are available for mental health care. And most of that money goes to the severe mental disorders of adulthood. The difficulty is most of those disorders have their beginnings in childhood or adolescence, when we should be working."

For example, anxiety and depression show up in schoolchildren aged five to 12, he says, and the early signs of severe disorders like schizophrenia emerge around 15 or 16.

In 2008, U.S. researchers published a paper that showed children as young as four can exhibit characteristics of obsessive compulsive disorder, an anxiety disorder with repetitive behaviours such as hand-washing, counting, touching, checking or cleaning.

Left untreated, the authors wrote, early childhood OCD can severely impair a child's growth and development and worsen as the child gets older.

OCD — famously portrayed by Jack Nicholson in the movie As Good As It Gets — is what Jodi began battling at age six.

In middle school, her attempts to relieve her anxieties by obsessive handwashing and tapping were replaced by the release she felt when she cut herself, her mother says, explaining much of this insight was gleaned in hindsight.

"Thank goodness for the Internet," says Linda. "I had no idea about any of this. No clue. I knew no one who'd dealt with this. I had to dig to learn about OCD behaviours."

Jodi deteriorated. In her teens, she was diagnosed with myriad other disorders such as post-traumatic stress disorder, a sleep disorder, an eating disorder and myofascial pain syndrome — a chronic form of muscle pain stemming from anxiety and the stress of being bullied for years. (Given recent reports of teen suicides stemming from bullying, its impact cannot be underestimated.)

Nothing seemed to work.

"My daughter is tricky. If she doesn't trust a doctor, she's not going to tell him everything. Some kids let it all out and explain everything. She didn't," says Linda.

Jodi was also mistrustful of medication, having tried numerous anti-anxiety and depression drugs, including Paxil, Effexor, amitriptyline and Seroquel, without success.

"Most people think you just take a pill and you're all better. Everything's taken care of, right?" says Frank MacMaster, a pediatric researcher with a PhD in neurobiology at the Alberta Children's Hospital.

"Not so much. Only about 30 to 45 per cent of adolescents with depression respond to the standard treatment. If that fails, they're off the books. It's up to the clinical skill of the psychiatrist or psychologist as to what to do next."

When medication and therapy failed, Jodi took her frustrations out on her family, which is common.

"The people who are closest are the ones in the line of fire and they are abused. She was quite abusive to us in her teens," says Linda.

Then came the wrenching decision to get a mental health warrant three years ago, when Jodi was 18.

The Mental Health Act of Alberta allows involuntary detention and admission to a hospital for examination and treatment against an individual's will if the person has a mental disorder, is a danger to herself or others and there's no alternative (usually meaning the person refuses to be admitted).

"You have to fill out a form and go in front of a judge who is told whether the person is a danger to themselves or others and if you feel afraid of your child. I was very afraid of my child — lots of times," says Linda.

"It's some leverage for you because sometimes you feel very helpless. It helps you set a boundary and say you won't be treated like that or they'll be taken to a psychiatric ward, which is not a very fun place to be."

Linda is angry, sad and frustrated about the ignorance and fear some have about mental disorders. "I've been told, 'Just tell her to get over it.'

She and Dale have also felt unfairly blamed as parents. She says: "There's nothing for parents to feel guilty about, and there's nothing for people with mental illness to be embarrassed about."

To cope, four years ago, Linda began going to a peer support group at the Parent Support Association of Calgary, designed to help parents to navigate conflict with their teens and youth. She's also joined a weekly group run by the Canadian Mental Health Association for parents of kids with mental health problems.

Peer support groups normalize what families are experiencing, and help parents adjust their expectations, says Ruby Lecot, director of client services for the Canadian Mental Health Association, Calgary Region.

"Your child's life may look a little a different than you thought it was going to. They're going to need different things from you as a parent. But different doesn't mean bad."

Peer support was a revelation for Linda. Everyone understood. "There was no blame, no judgment at all. You can let it all out. It's a huge relief."

There is humour, too, and that she adds, is tremendously healing.

Initially, she couldn't make it through a meeting without breaking down in tears; now she facilitates a group for PSA.

Through these peer support groups, Linda and Dale have learned it's important for parents and caregivers to stay "level," not to feed into the highs and lows of the mental disorder afflicting a loved one, and to take care of themselves.

At some point, they'd like to see their daughter move into assisted living, a transition they know won't be easy.

Jodi is now 21 and doing well. She's working hard to finish high school. She devotes time to her art work and gets out to see friends, a big step because she has refused to leave the house in the past. She doesn't take medication. Exercise, yoga and tai chi help, as do Chinese medicine, acupuncture and massage therapy.

"She has a really crappy life, I'll tell you. Yet we still have a good life. We have fun, we play darts in the garage. It's not all doom and gloom. She has this, but it doesn't define her. There's definitely life after and during mental illness. You don't get over it, but you learn to manage and live with it," says Linda, describing her daughter as an "awesome, artistic person" who loves music, nature and all things Victorian.

"It's really good to laugh. We put on a crazy movie that we've seen a thousand times and we laugh."

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